Deep in ALS fears!

Hi everyone! I’ve just spend about an hour reading old posts about ALS. I just can’t get out of the rabbit hole. Twitches, increasing every day are plaguing me. But even more than that, extreme leg stiffness in my calves, my legs feel
So weak, my left knee feels like it’s going to buckle when I walk.

I’ve been to neurologist and have an EMG scheduled but it’s not until December. I have barely low vitamin d and b6 which I am supplementing but it doesn’t seem to be helping. Neurological exam was normal except for brisk reflexes, all of them.

I’m losing my mind. I feel like my legs are getting weaker and weaker by the day. They shake when I go up and down the stairs in my home. According to the neuro, there isn’t clinical weakness though.

I have a 2 year old, I’m a stay at home mom. All I can think of is having ALS and she won’t remember me, or at least she’ll never remember a healthy version of me. :(

I try to take my mind off of things, but it’s not possible when I’m walking around with these heavy, stiff legs! Or when I lay down to rest and my muscles start quivering or jerking.

Talk me down. Or am I right to be worried?

Read THIS as many times as you need to.

Positive thoughts

I read that often, thank you.

Does anyone know if popping joints are related to tension? In addition to my incredibly stiff muscles, I’ve notixed that I’m “popping” like crazy. Knees, ankles, shoulders, basically everytime I move something pops. This is definitely new and goes along with my symptoms somehow. Any advice appreciated. I’m still actively spiraling. I have. A few good moments a day but mostly just worrying...

I wish you well in this rabbit hole experience. I have had an emg and the twitching (I STILL twitch, 2 years later but no weakness!). When I started going to doctors about this I had a vitamin d deficiency too! I think that's a mom thing, we stay inside a lot more than our childless counterparts. I also believe having a small child exacerbates the fears and symptoms of these diseases. My number one concern was not being able to see my babies grow up. That and worrying about who would raise them when I was gone. It's hard to be logical or calm when there is so much depending on you. That fine thread of parental sanity is easily compromised especially if our bodies are giving us signs of impending doom. I still have a little fear but months and months of no progression and the normal EMG has me at a different place in the rabbit hole. Basically I'm right at the edge, always looking down and sometimes swaying into the darkness, but always able to see the light as well. I learned a while back that I would fare much better to live life worrying about my children and making as many memories as possible with them. I could be hit by a bus tomorrow. Or have a stroke right now. No matter what, the moments i have in life are precious. These words never affected me when I was deep in that fear. I just wanted to know symptoms, read patients stories, and wait for the weakness. I hope you can reach the light soon. And I promise that your EMG will be normal, just as mine was.

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Originally Posted by Mommyof2boys

I wish you well in this rabbit hole experience. I have had an emg and the twitching (I STILL twitch, 2 years later but no weakness!). When I started going to doctors about this I had a vitamin d deficiency too! I think that's a mom thing, we stay inside a lot more than our childless counterparts. I also believe having a small child exacerbates the fears and symptoms of these diseases. My number one concern was not being able to see my babies grow up. That and worrying about who would raise them when I was gone. It's hard to be logical or calm when there is so much depending on you. That fine thread of parental sanity is easily compromised especially if our bodies are giving us signs of impending doom. I still have a little fear but months and months of no progression and the normal EMG has me at a different place in the rabbit hole. Basically I'm right at the edge, always looking down and sometimes swaying into the darkness, but always able to see the light as well. I learned a while back that I would fare much better to live life worrying about my children and making as many memories as possible with them. I could be hit by a bus tomorrow. Or have a stroke right now. No matter what, the moments i have in life are precious. These words never affected me when I was deep in that fear. I just wanted to know symptoms, read patients stories, and wait for the weakness. I hope you can reach the light soon. And I promise that your EMG will be normal, just as mine was.

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Thank you so much for your encouragement. I wish I could just forget about it and see what symptoms disappear. It’s just impossible with so many ongoing symptoms though.

The notion of ALS actually helps me with anxiety in a round about way.

I should preface this with the fact that in all my years of dealing with HA, ALS was never a fear and neither was MS, it has mostly been cancer related fears in the past. This is in spite of a mountain of neurological symptoms.

So, with that in mind, early on I looked at ALS from a very fatalistic perspective. If I were to get ALS, there is not much they can do for me anyway. Treatment is limited, and it usually ends badly. Ere go, if I cannot do anything about it, I am not going to worry about it. This way of thinking actually laid the groundwork and marked a huge breakthrough for me with anxiety, and was really a stepping stone to something close to a recovery. A real diagnosis with something non-neurological helped too, as it allowed me to put my life in perspective.

The thing is, when I accepted the neurological symptoms as anxiety, they usually went away, or at least diminished. But even if they didn't, I have decided to refuse letting new worries in by looking for reasons. I have decided not to borrow too many troubles. I have never had a single symptom in my entire 48 years be a merited medical condition. Without exception, it has always been anxiety. The one real, dangerous medical issue I have had zero symptoms, warnings or signs whatsoever. It still doesn't, which probably makes it easier to live with.

Try not to borrow trouble, as the old expression goes, and never assume your symptoms cannot just be anxiety.

Of course they can.

^^^ Great post Lofwyr! ^^^

Positive thoughts

Thank you so much!

The whole “can’t do anything about it” thing is what gets me. And it’s because I have a 2 year old. It deeply stresses me out worrying about her growing up without a mom.

I’m trying so hard to just accept this is probably anxiety. The way things are going doesn’t go along with ALS patterns. For example, the muscle spasms are body wide, not just in one muscle. I don’t have clinical weakness although I feel very weak. But I do worry about the brisk reflexes a lot! Today I told myself I wasn’t going to worry about anything until 7:00 tonight. I tried really hard but just couldn’t do it. I can’t not worry about the actual physical symptoms I’m feeling. The feelings are real, caused by anxiety or not, and I can’t just ignore them. I’m going to try the whole 7:00 plan again tomorrow. Hoping it’ll be a better day.

My days are not getting better. I have no one to talk to, my husband just tells me “34 year olds don’t get als.” I’ve been on google all day, there are many stories of people presenting with als with my symptoms. I just can’t find any other explanation for the brisk reflexes, leg stiffness and cramps, and the muscle spasms. (Mostly the creepy crawly kind, sometimes jerking) I think all of these symptoms at the same time and just too much of a coincidence. I feel so hopeless.

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Originally Posted by Desha34

My days are not getting better. I have no one to talk to, my husband just tells me “34 year olds don’t get als.” I’ve been on google all day, there are many stories of people presenting with als with my symptoms. I just can’t find any other explanation for the brisk reflexes, leg stiffness and cramps, and the muscle spasms. (Mostly the creepy crawly kind, sometimes jerking) I think all of these symptoms at the same time and just too much of a coincidence. I feel so hopeless.

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Did you ever get this sorted out?! I have brisk reflexes. My neuro doesn’t seem concerned but I am. How are you now??